When I decided to sit and write this as a blog post, I’ll admit I had no idea what way to start or how to go about things. All I knew was that I needed and badly wanted to, and I felt a sudden urge in the last few days for this particular one to be done soon. It’s unimaginable and wrong for any literally just gone twenty-year-old to ever have to do this but here I am.
We always think it could never be me. We watch the TV and scroll through our Facebook news feed for example, let’s be honest. We’re looking for any bit of news we can find out, purely out of boredom at the best of times. It’s human nature I guess. We mean no harm by it, and we sometimes don’t even realise we’re doing it I suppose. But it’s always news about others that we seek. We always expect to hear about the tragedies and for it to be strangers involved or worse than that, God forbid it would be someone we knew. The point is though… it’s always expected in our heads for it to be someone else sub-consciously, never me.
When I first started my blog, initially I was doing it in weekly diary form. In the last few months though, that hasn’t been possible for a number of reasons, which couldn’t be avoided. I have been going around telling anyone who asks, that I’m sick roughly 6 months. It was only yesterday it dawned on me that I’m actually at the end of the 8th month! That alone is absolutely crazy. Which leads me to my next topic. Time. It’s not something anyone particularly likes when you think about it. It brings with it a lot more negatives than positives, I can tell you that much if it wasn’t already known to you. Time is short lived.
Unfortunately, since I last wrote a blog post, things have massively changed. The front line of treatment (Chemotherapy) did not shrink the tumour. The tumour had been continuing to grow while I was on the chemo. This meant there was no point in continuing with it. Why go through the symptoms and side effects if they are doing nothing only harm. No thank you! I’d had enough of that poison pumped into my body.
Radiotherapy was now the next option mentioned to me. However, it was not even guaranteed to shrink it. The consultant explained how they had chosen and used the best and strongest front line option for my tumour. She said how she had gone above and beyond to get the best treatment she could for my type of tumour. She had been in touch with some very knowledgeable people, who would have done nothing different to what she had chosen to go with. I just got extremely unlucky with the location of the tumour. Plus there’s the aggressiveness of it. That’s all I ever hear. All I ever seem to talk about when people get curious! I got the short straw for sure here.
The one thing about the radiotherapy that was made very clear from when it was first mentioned, was that it wasn’t treatment. It was to keep me on my feet longer and to reduce the pain. You read that, and the realisation probably right about now sinks in that things weren’t sounding so amazing to us, and that things aren’t or weren’t as we’d have hoped at that time.
So we had our meetings with a new consultant and asked all the questions I could possibly think of. Things didn’t sound very reassuring at all. It was a case of him not even being able to answer us when we asked were the chances even 50/50 of the radium doing the above. I had the markings done and had a look around where I’d be staying if I decided to go with it. That was the big thing. Whether or not I’d decide to go for it. Now at this point I had been quite good and my mobility was only starting to go downhill due to the pain getting worse in my pelvis and in my left leg. The fact that the big reason they, the medics, were pushing for me to go for it, was putting serious pressure on me to make a decision.
It took me a good month to five weeks to make my mind up. I had some really good days and I decided that whatever decision I came to, I would go with it and just not look back, that it would have been the right one regardless. I had some very enjoyable days with my family and friends. I celebrated my 20th birthday and even had a little party at my house just because why not! Life, as I’ve learned the hard way, is far too short. So if I want to celebrate my 20th year of life, I will! The one negative thing coming next, is that once the party was over with and things went back to the usual routine, Niamh (being me) went downhill. From literally the very next day until this present day. I’ve been gradually going in the direction I dreaded for so so long. That massive loss of independence and choice. It’s something no one could possibly understand until they’re in that position themselves. There was one excruciating night of pain. A Sunday night. I couldn’t possibly imagine pain worse than it. It took the pain of that night for me to face the fact I was as well to try the radium if it could improve the pain in itself, that would give me a better quality of life. And at this point, that was all that mattered.
So I made my decision finally and went for the radium for the 3 weeks before Christmas. I just got finished my final session on the Thursday before Christmas day. It was hard to say if it had done much for me at that point. Also, while I was in hospital for the radium, things didn’t go exactly as smoothly as they could have. I had a seizure in the middle of the night at one point and it wasn’t the nicest. It caused my pain to light up. It was unbearable. My meds were all reviewed and changed after that. I finally felt an ease in the pain. For a while, what was changed around, was working well for me. So I got home for Christmas happy enough, not pain free, as I never am, but as close to it as I could be.
I then of course had to go and have a fall on Christmas day. At this point now my mobility was at the point where I needed the wheelchair all the time and transfers were difficult for me, but I managed all the same, with walking aids and what not. It’s ironic since I was a care assistant in a nursing home for 7 months exactly a year ago, helping people with exactly what I need help with now. Surreal.
Between now and the radium, I’ve only slightly gotten worse mobility wise. My left leg is losing sensation gradually. I was told to expect that though, still extremely strange all the same! It’s something I never thought I would have to experience of course. But all the same, I’m adapting. And that’s what this is all about. Adapting to the changes that come with this rotten disease. Otherwise you would drive yourself daft thinking about them. This is it now. This is the way it is to be. I feel there is definitely some reason for why I was picked to try fight this. We don’t know yet what it is, but there is one. Somewhere down the line, it will become known to my family. That’s my outlook on it! I find that quite comforting too in a sense.
As much as I’ve said there is nothing left in this country to treat my Osteosarcoma, the size, the aggressiveness, and the stage of it, is all just going against me. Now my parents and other family members have been very good and involved in finding other ways and possibilities of getting me better. Such as trials and different treatments abroad in the US or England or Germany. They have been looking into everything and my files have been sent to some of the best doctors and professors in the world to read. To date though, they have all got back with no’s. I’m not eligible for anything at the moment. Yet, we by all means, are and will not give up! The positive vibes will continue. Something might come up which is suitable for my particular illness. A fundraising committee had been set up back at the beginning, consisting of family, friends and neighbours. I am so very thankful to everyone involved in the fundraising to date and to everyone who has donated! It has meant that if something does come up, there is money raised which can be used. It is also a great help to my family to date as especially now, I need full time care.
My mobility is the only issue with things if something eventually did come up that suited my illness. Getting me to another country isn’t going to be so simple. But if it happens that something comes up, we could try our best to make it work and get over there somehow. I’m always going to hold on to that bit of hope no matter what bad news the medical people throw my way! They can try and make me feel as though there’s nothing worth clinging onto anymore, but that will never happen with me. I have gotten some serious willpower through all of this. I’ve got fight left in me yet. And plenty of it at that!
If there is one thing that I would like to make as clear as possible to everyone following my blog and to who knows me, it’s to only do what YOU want, and what makes YOU happy. My reason for this is what, you wonder. It’s because before I got sick, I didn’t. I lived my life constantly to suit others. For my entire life previous to being sick, I would always factor other people in to my decision way too much. I know it’s natural to an extent, to do that. But I went overboard. I didn’t see it then though, typically. It’s only now I’m seeing everything so different. Cancer does bring with it that element of thinking back and saying how I should have or could have, and now here I am, restricted.
Another massive thing it has taught me, is to just build bridges. Forget the stupid reason you put the label ‘hate’ on someone. Whatever they did that was so bad…. Just forget about it. You may think it can’t be forgotten, but then put yourself in my shoes, and imagine how you would feel if you hadn’t built those bridges! If there were things left unsaid. Then you will realise it can be forgotten just as quick. The longer things are left unsaid with that person, and the longer things are just left pure awkward with them, the harder it is to resolve when the time does come. As time goes on, the original problem that started off fairly minor, turns to a major problem in your head. Just please don’t hold that next grudge with someone when you encounter a problem. It’s something that seems to be so sinister. But really, for me, it’s massive.
To the people of my generation out there reading this, one emphasis I will have, is to enjoy those nights out as best you can now! I wish I still could. I’m there each night after taking my something like 44 tablets a day and giving myself injections, while watching snapchat stories of you all out enjoying yourselves. I really am envious of each and every one of you. I was so so jealous at first, but I have sort of gotten used to it and I don’t let it bother me as much as it once did. I avoid using snapchat as much now just to avoid an awful lot of bother. I think it made me jealous in the first place, because I was the type of person who loved going on a night out. Then though, once time went by, I let it bother me that bit less and less. It is still something that will make me angry the odd night every so often however, but that can’t be helped.
The one last thing on this particular blog post that I’m going to talk about, is really and truly appreciating what you have. Now I know I have gone on about this in previous blog posts, but in this one, my intentions are to make it as clear as day.
We all have the tendency to look at others appearance and what others have got, and say or think or wish that you looked or had the same as that person. When really, we should be looking at what we already have ourselves. And in particular, what we had to do to get to where we are at this present moment. Appreciation. That one word. It means more to me than I could ever try to express in words to anyone.
Wherever you’re at in your life at the moment. It could seem perfectly fine and this may not have anything to get through to you. But there’s also the possibility that this could really relate to your life at the moment and you might need to hear this to realise a certain something. I believe that if you have in any way put the work in to get to where you are in your life at the minute, and you weren’t happy putting the work in in the first place or throughout, then you need to stop and think. What is it you really love. What makes you happy. Putting money aside… Seeing as let’s be honest, the way we tend to think is that we should do the jobs that will make you the most money for example. And do the extra bit of work or whatever it is just to make that bit extra money. What about some of that time spent doing those things for money which had absolutely no benefit to you in the long run or sometimes at the time even except keep us ticking by. Money will mean nothing in the end. Nor will the material objects. That is why I cannot stress enough to do what makes YOU happy and no one else. And to appreciate what you have got and achieved so far in life. Not what you haven’t got. Even if it is only small, in the grand scheme of things, it’s big to you, if you put the effort in and succeeded. Take the credit and the complements. You do deserve it!
The reason I have such a big thing about this is because it’s something I never did and I look back now and realise how constantly hard on myself I was. If I could change one general big thing, it would be that. That I’d gone easier on myself and just appreciated what I already had rather than constantly be envious of what others had and how they were or what not. It’s something I was shocking for. I really have been far too self-conscious all my life.
It’s only when you stare the massive possibility of death in the face, at twenty years of age, or at any age of course, that you realise these things. It’s such a pity… That it takes something so horrible for a person to realise. People read things like this all the time and I can’t be sure that anything gets through to them in them, any more than mine. I know this because it has happened me before I was sick where I was just so oblivious to life and things like major illnesses. I guess it’s because I was lucky enough to not have a history of cancer in my family. It’s scary though, I will admit that. Fear is in me. However, I’ve finally gotten an acceptance for the way things are now. I’ve done everything I needed to do to make sure that what could be my final days/ weeks/ months, will be happy ones. Anything that I’ve had to do to make my life easier and stress free, I’ve done. I’ve been completely selfish in a way I suppose… But I’ve had to be. In this situation it’s impossible to know if you’re even doing right or wrong. I’m ploughing on though and doing what feels best for me. I believe what’s most important is that I stay happy. I have had to adapt to so many changes I actually couldn’t express them all here there’s so many. One major change or adaptation I have had to make this week is to move my bedroom downstairs. That for me was quite hard. The stairs was getting too hard even with a stair lift. All the transfers. So I had to face it that I needed to be down rather than up, which was fair enough at that point.
I’m going to leave it at that for now, I am uncertain of future blog posts, I hope to get doing some. Differently to how I was going, as that’s realistically not doable for me anymore to be honest. I will do my best to have some topical blog posts up every so often though, keeping you all updated on where I’m at!